Families Living with Illness - the Hidden World

This article was first published Sep 28, 2011 by Toni Bernhard, J.D.* in her Psychology Today blog – “Turning Straw Into Gold (Illness through a Buddhist lens)”. As Toni explains, chronic pain or illness means learning to live a life we didn’t train for.

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The Challenges of Living with Invisible Pain or Illness

Toni Bernhard, JD

Caregivers and those they care for often live in an invisible world.

In May of 2001, I got sick with what the doctors thought was an acute viral infection. But I didn't recover. As the months went by and I didn't get better, I felt as if I'd entered a parallel universe that I didn't know existed.

One reason this universe is largely invisible is that many people living with chronic pain or illness don't look any different from those around them. We simply don't look sick or in pain.

I should qualify that. The people who are with us all the time know that we are suffering. They see those subtle differences in our demeanor when our symptoms intensify. These are our caregivers (called "carers" in many countries) and they inhabit this parallel world with us. At the end of this piece, I'll talk about the unique challenges they face.

I was surprised to learn how many medical problems are invisible to others, even illnesses that are life-threatening, such as cancer and heart disease.

I'm sure that most television viewers who saw Venus Williams – [then] recently diagnosed with Sjögren's Syndrome - watching from the stands as her sister played in the U.S. Open tennis final, thought, "But she doesn't look sick."

What are some of the experiences we share in this invisible universe?

Guilt, Embarrassment, and Isolation

We often feel it's our fault that we got sick or that our bodies broke down in some way - as if it's a personal failing on our part.

We live in a culture that worships at the altar of wellness. We're bombarded by ads that tell us we can be healthy all the time. Yes, it's okay to get sick or be in acute pain due to an injury or a surgical procedure, but then we're supposed to get better.

Everyone expected that of me and I expected that of myself. For years, I felt embarrassed that I wasn't living up to the cultural norm.

This expectation of perfect health is especially hard on young people who face pressure from family and friends to "hit the gym" and "stay in shape." I didn't realize how many young people struggle with chronic pain and illness. I was already a grandmother when I got sick, so, if I felt embarrassed, imagine how they feel.

Many of us believe that we've let our family and friends down. In the early years of the illness, I used to sob to my husband, "I've ruined your life." I count myself fortunate to have had his shoulder to cry on because many spouses and partners don't stick around, leaving those who are sick or in pain on their own, sometimes to raise young children. The isolation can be devastating, as can the guilt over not being as active a parent as one had dreamed of.

Even those of us who aren't left alone have to adjust to a life of relative social isolation as most of our friends slowly drift away.

Frustration at the Lack of Understanding

You simply cannot make intense chronic pain or illness-related debilitating fatigue go away through strenuous exercise, although I've read many accounts of doctors who have prescribed just this as a treatment. This lack of understanding from the medical community can have serious, even deadly, consequences because people become gun-shy about seeing a doctor should a new symptom appear - a symptom that could turn out to be a sign of a life-threatening, unrelated medical problem.

We're often treated as malingerers by family members, friends, the medical profession, and the general public.

After I was interviewed on a local National Public Radio show, I got an email from a listener telling me that he didn't want his tax dollars going to support "an amotivational slacker." Nice little phrase, that. If you figure out what it means, please let me know. All I know is that when I read it, it stung.

People with chronic pain conditions are sometimes labeled as "drug seekers" in emergency rooms and, as a result, are denied much-needed pain relief medication. Several people have told me that, unless their personal doctor is available to vouch for them, they won't go to the ER, no matter how unbearable their pain becomes.

The Dilemma of How to "Present" to the World

Should we spruce ourselves up and risk people erroneously thinking we can participate fully in whatever they're doing?

This is particularly a dilemma during the holidays and at family gatherings. People suffering from chronic pain or illness will take great care to look their best for everyone, only to be criticized for not pitching in more with the cooking and clean-up. The alternative is to stay in our sweats which can lead to feelings of guilt that we're letting ourselves go and not doing enough to lift our spirits.

We're often misjudged by others if they see us looking nice or being active in any way. Healthy people tend to assume it's all or nothing: We're either sick or we're not; we're either in pain or we're not. And so, if they see us doing anything "normal," they assume we're 100% well. This has happened to me many times. Someone will see me at an espresso place with a friend and assume I've recovered, unaware that I came from the bed and will collapse on it after the visit.

People aren't deliberately being insensitive. They just don't know.

More tragic, I know people who've had their long-term disability payments revoked because an investigator sent to spy on them saw them being active in some way. In one instance, the investigator saw the person doing some gardening in her front yard. Wow. Limited as I am, I sometimes pull weeds; I can't ask my husband to do everything!

Caregivers

Caregivers face their own set of stressors.

• They must live with the frustration of not being able to make their loved ones better.

• They're suddenly thrown into the role of patient advocate in the medical system, a role for which they have no training or expertise.

• They often have to take over the running of the household.

• Caregivers see us at our worst, as we put on a good show for others (for me, this means running on adrenaline), only to collapse when we're in the privacy of our own homes or apartments.

• Caregivers of a spouse or partner also have to adjust to the isolation that results from losing their companion out in the world. This has been very hard on my husband. For the most part, when he goes out, he goes alone. When he travels to visit old friends, he travels alone. It's very hard. I can tell.

Many caregivers, particularly men, suffer in silence, not sharing with co-workers or friends the burdens they bear and how difficult their life has become. It's not surprising that so many of these "invisible caregivers" are clinically depressed.

These are some of the challenges that those of us with chronic medical conditions and those who care for us face. It's as if a second, parallel life has been superimposed on the one we're already living. No wonder we feel that this second life is a full-time job in itself - a job we didn't train for and which we are often ill-equipped to perform.

It took me many years to find a measure of peace and joy in this hand I've been dealt. My heartfelt wish is that you find your measure of peace and joy too.

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Resources for Caregivers, Youngsters & Siblings of People with Health Concerns

Toni cites the following under "Helpful Links" at her How To Be Sick site:

Today’s Caregiver is an online magazine (also available the old-fashioned way if you subscribe). The website offers many resources, including interviews with caregivers, articles by caregivers, a list of support groups around the U.S, and the opportunity to chat online with other caregivers:http://www.caregiver.com

Family Caregiver Alliance provides a wealth of information on the challenges facing caregivers, including information and advice for coping with specific problems (like the silent plight of caregiver depression), support groups, and free e-newsletters on different topics related to caregiving: http://www.caregiver.org

Empowering Caregivers has many resources including online communities that caregivers can be a part of through its message boards, forums, and chat rooms:http://www.care-givers.com

The C. Everett Koop Institute at Dartmouth is a website devoted to teens with chronic illness. It includes many inspiring stories written by teens. The current listing includes stories by teens with diabetes, asthma, lymphocytic leukemia, Marfan’s Syndrome, Sjogren’s Syndrome, aplastic anemia, non-Hodgkins lymphoma, Crohn’s disease, Cystic Fibrosis. Often a teen’s story is followed by an essay by his or her parents. The site includes links to other websites for children and teens that focus on their specific illness or condition:http://dms.dartmouth.edu/koop/resources/chronic_illness/

Well Spouse Association is an online community of support for spousal caregivers. You can also use it to connect with local support groups. I like their welcome message: “You are not alone: when one is sick…two need help.” http://www.wellspouse.org/

Sibling Support Project is an online community for brothers and sisters of people who have special health, developmental, or mental health concerns:http://www.siblingsupport.org/

Thank you for your understanding. Perhaps if enough of us are willing to tell our stories, we might actually get through to some people. I’ve been through all the phases you mentioned, and it’s not been pleasant.

I have accepted my limitations and do what I can. I wish I could say it doesn’t matter to me what other people think, but it does. Our society truly believes it’s all or nothing. We should be up and doing or lying in bed, awaiting the ends of our lives. Too bad, people, it doesn’t work that way!

I’m fortunate to have several cousins with severe osteoarthritis, rheumatoid arthritis, and other forms of arthritis such as lupus, Sjögren's Syndrome and scleroderma. They get it. And we have conversations about all the topics in your article. Their support helps.